Costochondritis and lung problems

Posted by jmb73 @jmb73, Jul 8 11:05am

I have had costochronditis for 5 years now and with my asthma getting worse, I don’t know if it’s my lungs or what. My lung doc wants me to take my nebulizer more often as he thinks it is lung problems. I do take it and it helps a bit but it doesn’t go away. I talked with my cardiologist and he doesn’t want me to take any NSAIDS because of my AFIB and PVC’s. I had a cardiac catherization a few years ago and it was fine for my age! I am 76. I just wonder if any of you have every had this problem. Thanks for your help. Joan

My wife started having serious problems with her lungs about 10 years ago and she started to cough for days and she also had asthma.They tested her with prednisone and antibiotics and she would get better for a few weeks and then start all over again. She seen a pulmonologist who was finding out from blood tests that she had a rare lung disease that most doctors had never heard of it. The patients were being diagnosed with different types of lung problems from emphysema, chronic bronchitis and were not getting the treatments that would extend lives of people who were dying and in many cases could live with a fairly normal life as long as they were receiving the medication they needed. Ask your doctor to test you for Alpha -1 Antitripson disease. If you have this disease it is treated with a weekly injection that a nurse comes to your home and gives you this treatment once a week. It is covered by Medicare and Medicaid and there are drug treatment programs that will pay for the medication. If your doctor has not heard about it , we can get you the free blood test kits .
If you have not been tested for Alpha-1 Antitrypson disease. You need to get it done ASAP. Please let me know how I can help you.

Liked by karenoc

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Yes…Alpha 1 Anti-trypsin is a mysterious attack of the lungs that is frequently overlooked. I inherited from my Mom…she passed away at age 90, had serious oxygen and circulation issues. I am getting close to my 3 year Double Lung Transplant anniversary!
Ask your Dr and get checked!

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Live in southern Utah were or who to contact for alpha-1 test i have stage four copd and 26 percent of lung

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Hi all,
I thought you might be interested in these related discussions:
– Alpha-1 Antitrypsin Deficiency – just been diagnosed https://connect.mayoclinic.org/discussion/alpha-1-antitrypsin-deficiency-just-been-diagnosed/
– COPD: Is it genetic? alpha-1 antitrypsin deficiency https://connect.mayoclinic.org/discussion/copd-is-it-genetic/
– Costochondritis https://connect.mayoclinic.org/discussion/costochondritis-1/

@al4terry, I hope you'll take part in the discussions about alpha-1 antitrypsin. Your wife's experience will be valuable for other members.
@jmb73, how often are you nebulizing now?
@karenoc, congrats on the 3-year anniversary of the double-lung transplant. Wow. I recommend you also follow the Transplants group: https://connect.mayoclinic.org/group/transplants/ I bet you would have a great story to add to this discussion
– Lung Transplant Post-op? would like to hear positive stories https://connect.mayoclinic.org/discussion/lung-transplant-post-op-would-like-to-hear-positive-stories/

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@al4terry

My wife started having serious problems with her lungs about 10 years ago and she started to cough for days and she also had asthma.They tested her with prednisone and antibiotics and she would get better for a few weeks and then start all over again. She seen a pulmonologist who was finding out from blood tests that she had a rare lung disease that most doctors had never heard of it. The patients were being diagnosed with different types of lung problems from emphysema, chronic bronchitis and were not getting the treatments that would extend lives of people who were dying and in many cases could live with a fairly normal life as long as they were receiving the medication they needed. Ask your doctor to test you for Alpha -1 Antitripson disease. If you have this disease it is treated with a weekly injection that a nurse comes to your home and gives you this treatment once a week. It is covered by Medicare and Medicaid and there are drug treatment programs that will pay for the medication. If your doctor has not heard about it , we can get you the free blood test kits .
If you have not been tested for Alpha-1 Antitrypson disease. You need to get it done ASAP. Please let me know how I can help you.

Jump to this post

I will call my lung doc on Monday and see if he can test me for it. I looked up the symptoms and I have some of them. When I get a cold it always sends me to the hospital. COVID 19 has kept me away from people and I am very afraid of going to the hospital at this time. My father died of lung issues but he smoked. I have never smoked but I have mild COPD from second hand smoke. I really appreciate your information and I will let you know what the doctor says. Thank you.

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@colleenyoung

Hi all,
I thought you might be interested in these related discussions:
– Alpha-1 Antitrypsin Deficiency – just been diagnosed https://connect.mayoclinic.org/discussion/alpha-1-antitrypsin-deficiency-just-been-diagnosed/
– COPD: Is it genetic? alpha-1 antitrypsin deficiency https://connect.mayoclinic.org/discussion/copd-is-it-genetic/
– Costochondritis https://connect.mayoclinic.org/discussion/costochondritis-1/

@al4terry, I hope you'll take part in the discussions about alpha-1 antitrypsin. Your wife's experience will be valuable for other members.
@jmb73, how often are you nebulizing now?
@karenoc, congrats on the 3-year anniversary of the double-lung transplant. Wow. I recommend you also follow the Transplants group: https://connect.mayoclinic.org/group/transplants/ I bet you would have a great story to add to this discussion
– Lung Transplant Post-op? would like to hear positive stories https://connect.mayoclinic.org/discussion/lung-transplant-post-op-would-like-to-hear-positive-stories/

Jump to this post

I am nebulizing about 3 times a week and taking my inhaler about once a week. I am on Breo 200 which has prednisone in it. I take it first thing in the morning and usually I can breathe better by 10 or so. I have been told by the pharmacist not to take any breathing treatments for 4 hours after taking Breo 200 . I did once and I was hyper. I will check with my lung doc on Monday and see what they say. Thank you.

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@jmb73

I will call my lung doc on Monday and see if he can test me for it. I looked up the symptoms and I have some of them. When I get a cold it always sends me to the hospital. COVID 19 has kept me away from people and I am very afraid of going to the hospital at this time. My father died of lung issues but he smoked. I have never smoked but I have mild COPD from second hand smoke. I really appreciate your information and I will let you know what the doctor says. Thank you.

Jump to this post

How did your appointment go, @jmb73? What did the doc say?

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@colleenyoung

How did your appointment go, @jmb73? What did the doc say?

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I got a telephone appointment with the PA and she said it was probably allergies and to take Allegra with my Montelukast. I reminded her that I have Sjogrens and don't want to get drier. I have been tested for allergies by an immunologist and had no reaction to the first set of injections so he immediately repeated some of them. I had an anaphalactic reaction and he never said what caused it. It was scary. He did want me on drops but I refused. I got a report and it showed some allergies but nothing severe. He did diagnose me with a low IgA and IgM and no immunity to pneumonia even though I have had both shots. He did give me another pneumonia shot. I don't know if any of this could be connected to Alpha-1. I am still having the pain and breathing problems but not every day. I have to call the PA in a month and I will keep taking both allergy drugs. I don't seem to have all the symptoms of Alpha-1- that are listed but if I will talk to her about being tested. Thank you for keeping in touch.

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I have pain at the middle of my upper chest since last 2 years. I went to a lot of doctors they all told me that it's costochondritis, they prescribed me medicines, physiotherapy and some exercise as well, I have already done all my test like ECG, X-Ray, CT-Scan and several blood tests which are all fine, but the pain is the same as it was 2 years ago.

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@khanm

I have pain at the middle of my upper chest since last 2 years. I went to a lot of doctors they all told me that it's costochondritis, they prescribed me medicines, physiotherapy and some exercise as well, I have already done all my test like ECG, X-Ray, CT-Scan and several blood tests which are all fine, but the pain is the same as it was 2 years ago.

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Hi @khanm
Speaking merely from experience – I suffered 3 years with Costochondral chondritis. I was seen by many healthcare providers including Physical therapist, acupuncturist, chiropractors, Reiki specialists, and pain clinics which one clinic included injections every single week for an entire year. I was seen by several surgeons. Finally ended up successfully pain free by going through the Mayo Clinic Pain Clinic and surgery where the doctors removed my sternal manubrium joint and have been completely pain free since.

Mine stemmed from an injury I sustained in a car accident where I sustained A paired over fracture through the sternum manubrium joint. Can you share alittle more about the source of pain or suspected cause?

Curious,
Dawn

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@dawn_giacabazi

Hi @khanm
Speaking merely from experience – I suffered 3 years with Costochondral chondritis. I was seen by many healthcare providers including Physical therapist, acupuncturist, chiropractors, Reiki specialists, and pain clinics which one clinic included injections every single week for an entire year. I was seen by several surgeons. Finally ended up successfully pain free by going through the Mayo Clinic Pain Clinic and surgery where the doctors removed my sternal manubrium joint and have been completely pain free since.

Mine stemmed from an injury I sustained in a car accident where I sustained A paired over fracture through the sternum manubrium joint. Can you share alittle more about the source of pain or suspected cause?

Curious,
Dawn

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Thank you very much for replying and for sharing your experience. My pain started suddenly without any accident or injury. I feel pain when I cough, move the upper body or press it with my hand at that place.

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@khanm
Do you mind sharing a few of the different treatments?

The greatest relief came from a referral to a Reiki specialist back in the early development of the Mayo Pain Consortium clinic. There’s a specific technique she taught me call the “Pain Drain”. In just a few short session I was able to master the technique and do by phone so I didn’t have to travel 5 1/2 hours to Rochester every week . I still use the technique on a daily basis to help me cope with my other chronic pain and acute issues. I highly recommend the Mayo Clinic Pain Rehabilitation Center.
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
What are your doctors current recommendations?

Hoping for relief soon!!
Dawn

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@dawn_giacabazi

@khanm
Do you mind sharing a few of the different treatments?

The greatest relief came from a referral to a Reiki specialist back in the early development of the Mayo Pain Consortium clinic. There’s a specific technique she taught me call the “Pain Drain”. In just a few short session I was able to master the technique and do by phone so I didn’t have to travel 5 1/2 hours to Rochester every week . I still use the technique on a daily basis to help me cope with my other chronic pain and acute issues. I highly recommend the Mayo Clinic Pain Rehabilitation Center.
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
What are your doctors current recommendations?

Hoping for relief soon!!
Dawn

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Hi Dawn, Have you had to go up bra sizes from the costochronditis? I have gone up 4 sizes and my lung doc thinks it's from arthritis in my chest. I was wondering if any of you have had this problem.

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@jmb73
Thank you for reaching out and That is a very good question. The answer in short – YES But I will share a longer version which is not in the medical text books.

Before they removed my sternum my chest wall became very barrel shaped. The theory “The more stable you can keep the chest the better the pain control”. The doctors believed that the sternal joint is a “false joint” However the purpose of the sternal manubrium joint is to allow your chest to rise and fall with each breath. This constant movement becomes the problem. Unlike a joint like knee and elbow you can not immobilize it. At the time of my injuries we tried to have a special brace formed to help minimize the movement which did help but not enough to prevent further injuries which keeps the inflammation angry. My paired over fracture, over the course of 3 years splintered 100’s of different ways causing 100’s of bone fragments in my breasts & 7 hours of surgical intervention to dissect as many as possible during the 1st surgery. They harvested bone from my hip and implanted it in the sternal manubrium joint and wired in a figure eight pattern to prevent the movement and hopefully prevent further damage. 6 weeks after surgery the wires broke in 2 places therefore changing the once believed theory that the sternal manubrium joint is a “false joint”. I ended up back in surgery to remove all the hardware and we decided to leave a hole thus preventing friction when the chest would rise and fall with each breath. Resulting in the relief of irritation to the are and overall rest for the entire costocondral area and successful illumination of the inflammation.

Side note: your mind and body will subconsciously prevent you from deep breathing & will change your posture over time to drawl up the shoulders and pull them forward to protect the chest. This became the source of many other problems – chronic pneumonia, headaches, insomnia, depression, anxiety just to name a few. Took 6 months worth of physical & respiratory therapy to correct all the wrongs. But I was finally pain free!!

Have you noticed any other changes in your own situation?

There is hope and treatment options!!
Dawn

REPLY
@dawn_giacabazi

@jmb73
Thank you for reaching out and That is a very good question. The answer in short – YES But I will share a longer version which is not in the medical text books.

Before they removed my sternum my chest wall became very barrel shaped. The theory “The more stable you can keep the chest the better the pain control”. The doctors believed that the sternal joint is a “false joint” However the purpose of the sternal manubrium joint is to allow your chest to rise and fall with each breath. This constant movement becomes the problem. Unlike a joint like knee and elbow you can not immobilize it. At the time of my injuries we tried to have a special brace formed to help minimize the movement which did help but not enough to prevent further injuries which keeps the inflammation angry. My paired over fracture, over the course of 3 years splintered 100’s of different ways causing 100’s of bone fragments in my breasts & 7 hours of surgical intervention to dissect as many as possible during the 1st surgery. They harvested bone from my hip and implanted it in the sternal manubrium joint and wired in a figure eight pattern to prevent the movement and hopefully prevent further damage. 6 weeks after surgery the wires broke in 2 places therefore changing the once believed theory that the sternal manubrium joint is a “false joint”. I ended up back in surgery to remove all the hardware and we decided to leave a hole thus preventing friction when the chest would rise and fall with each breath. Resulting in the relief of irritation to the are and overall rest for the entire costocondral area and successful illumination of the inflammation.

Side note: your mind and body will subconsciously prevent you from deep breathing & will change your posture over time to drawl up the shoulders and pull them forward to protect the chest. This became the source of many other problems – chronic pneumonia, headaches, insomnia, depression, anxiety just to name a few. Took 6 months worth of physical & respiratory therapy to correct all the wrongs. But I was finally pain free!!

Have you noticed any other changes in your own situation?

There is hope and treatment options!!
Dawn

Jump to this post

Wow! You went through a lot. If I understand correctly, they shouldn't have removed your "false joint"?. I have talked to my lung doc and my rheumatologist and they just say costochronditis may go away on it's own. The pain has become intermittent and my breathing is still labored and of course I have bought extenders for my bras. I don't think I am eligible for anything but emergency surgery as my orthopedic is hoping to not replace my hip. He said I am at extremely high risk. Oh the joys of "old age". Thank you for all your information. I'm glad you are pain free.

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